Parents not accepting help, even though they need it

[Tricyrtis2022]

There is an ongoing situation with my parent. DF (87) has little remaining mobility. DM (73) has issues with arthritis in her knees, back and hands. DF was having falls years ago but they now happen more often and DM cannot lift him herself. They need help, but seem reluctant to accept most of it. We offered a ramp to make it easier with DF's wheelchair, but this has been rejected. Most things are rejected. They are struggling so much - I see my DM limping and DF barely able to shuffle from his armchair to wheelchair, that with the aid of his Zimmer frame, and I feel so frustrated. I don't know how they can continue for much longer and another crisis seems inevitable.

Is anyone else in this position?

Something I have learned from my very long tenure on this board is that this is what most of us here go through. It is almost always the way that it is only when a crisis happens that you can get things to change, and tbh you just have to be prepared to make as many things happen when there is a crisis, and the rest of the time remind yourself that they are adults who can make their own choices - even if you don't like those choices.

Is their catch phrase "we can manage"? My sibling and I live a distance away from our increasingly frail and cognitively declining DM [83] that means we can only visit at weekends, which we do. She still has capacity though, and I accepted a long time ago that we are waiting for an inevitable crisis of some kind.

In our case we finally got her to accept a daily carer visit this summer. Long story short, she lost a LOT of weight and it turns out she had been masking her cognitive issues, and she had lost the ability to cook and even microwave for herself (despite me stocking her fridge with ready meals). She accepted she couldn't keep asking her neighbours to come over every teatime to make her tea (lovely as they are). It took a lot of nudging and an enforced trip to the GP to get her to see she needed help. Now she accepts "her ladies wot does", although isn't overkeen on their relentless cheerfulness.

She has continued to decline, and could really do with a morning visit to help her get dressed as she won't admit she struggles with that, but that's another ongoing nudging situation.

The other issue is what help you can get them. We made a formal request to her local authority for a social care assessment at the start of July. Was advised on a 6 week backlog for assessments at the time, but it turns out it's actually a 5 month backlog as I only got contacted this week by her assigned social worker. We couldn't wait and identified a local private care company who have been absolutely fantastic so far. I do think they are a temporary solution and we should be looking at residential care, but both my DM and my sibling need to be brought round first.

Sad as it is I have to agree with CMOTDibbler - often the only way things will change is for a crisis to happen and all you can do is be prepared for it and be there to help them pick up the pieces. You cannot force help on someone who is capable of deciding for themselves whether or not to accept it.

That's exactly what the process is for us, CMOT. Waiting for the next crisis. And we've already had several, but even so help isn't well accepted or encouraged.

Yes, they are 'managing' which I see as struggling.

Thanks for the replies so far. It feels better to able to unload somewhere.

The way I approached is was let’s put everything in place so you can maintain your independence as long as possible reduce the risk of accidents can we get a cleaner in to do the big cleaning jobs which can be expanded as time goes on.
there’s usually a falls team which consists of physios and occupational therapists who can advise on adaption around the house. I would suggest that you or your brother are there for the appt and be very matter of fact about the positives

What do you think lies behind their refusal to accept help, Tri? Fear, maybe - but of what? People finding out that they haven't been coping? Invasion of privacy? Accepting help when you need it is absolutely horrible at first - I had cancer treatment a lot of last year and needed to ask for help, and I HATED it.

My mother is extremely wobbly physically, largely due to a really virulent form of arthritis plus sciatica, but she is still mentally all there. My main worry is that she really, really needs to sell her big house with its big garden - it's been on the market since the summer, but it's on a main road which has put off a lot of buyers (we don't really notice the traffic noise much but nobody visiting for the first time would believe that). She has found a bungalow in the same village which would be much more manageable, and is also talking about what happens if she can't cope with that either. My brother and I both live a 3-4 hour drive away and we've just agreed to step up the visits.

A falls team? I had no idea such a thing existed, but will look into it.

Re the OT, they've had a number of crises and a number of OT visits. A stair lift has been installed, plus raised toilet seats and hand rails. There is also a wheelchair on each floor. They also have a cleaner and a gardener. The most recent OT brought a load of extra aids, but they were all rejected. Not sure what they were, as I wasn't told.

Being there for the visit, is tricky as me and my siblings all work and live a distance away. Another issue is that carers and OTs have tended to visit at random times, which we can't prepare for.

The most glaring issue is that the ramps they have in place have a steep incline, which causes difficulties with my DM pushing a wheelchair up them.

I foresee yet another crisis looming.

I was in that position until a few weeks ago. It was a couple of crises one after the other with my mum. She'd been struggling for years but refusing to accept any help that wasn't me. I had to step back and do less for my own sake, her dementia got worse, the first real crisis saw her back home because she insisted on it and social services were crap but she broke her hip within a few weeks and is now just about to go to a care home as she's deemed to not have capacity (and doesn't seem bothered either way). I am relieved and hoping the phone calls will die down.

What do you think lies behind their refusal to accept help, Tri?

Squeaky, I suspect it's the fear of the unknown, of disruption to what was previously the comfortable and cosy life they hope to be able to return to. Except that's not going to happen, ever, because they are both deteriorating physically.

Nixer, I'm glad your mum is finally going into a care home and hope things get easier for you now.

Yes, in our case it's a complex mix of not wanting to face they're getting old, frustration at not being able to do the things they wanted to do, the loss of control, of having strangers coming into the house, not being able to be flexible about what time she eats and, ironically, not wanting to make a fuss and cause problems for me and my sibling.

My DM went through exactly the same thing with her mother, which she has acknowledged. But we're still where we are, despite everyone knowing what was coming.

Ask GP to refer to falls clinic.
Ask your local authority to do an OT assessment - even things like grab rails, raised toilet seat etc can help a lot.
Apply for Attendance Allowance for both if they don't already get a disability benefit- at least that can help with adaptions or equipment etc.

In addition to the wait-for-a-crisis approach I have taken the tough "say it as it is" approach with PIL, which is quite effective. eg we'd got to a stage where MIL was asking DH to make payments for her then tell her how much so she could send him a cheque. Next time we went down there we had a talk about letting DH have 3rd party access to her account. She said "but I don't want to be dependent on him, I'm still in control" I said "but you aren't are you? you have to ask DH to do everything for you. This just isn't working". Lo and behold, it happened.

Ditto her lifting FIL when he fell "if you lift him and hurt your back or you fall over and break your hip then where will you and he be? because that is what is going to happen. So when that does happen which care home do you both want to go to? Because we can't come and care for you. No? Right, let's get a falls alarm put in now and you call an ambulance if he can't get up however long it takes".

It helps that

• DH and I are both ambulance service and speaking from a lot of other people's experience
• it's a late second marriage so she sees me as more of a peer, not a child.

It is INFURIATING! But very very common.

For my parents they never accepted help willingly @Tricyrtis2022 . I credit the Elderly Parents board as the sole source of my sanity remaining as we lurched from crisis to crisis. But getting a carer in (not an agency, a lady who worked for herself) was a conduit to more things as they came to really trust her and she could (in consultation with me) get them to accept 'someone to pop in and help with the garden' 'someone to take mum out for an hour' and so on, and she had a great local network. But it took dad to decide he would use a mobility scooter rather than not being able to go anywhere himself. And then he told everyone how good they were

LadyGardenersQuestionTime, that sounds familiar. We've recently started on the plain speaking and really hope it'll get through. Something has to.

Good point about the falls alarm, I'll look into that and get one.

A poster on the old board always recommended care.com which can put you in touch with local independent carers- I.e not via an agency.

There's a lot of good advice on the thread and what @LadyGardenersQuestionTime says really resonates. The biggest problem as I see it is that they don't want to be a burden to you, so they refuse help and insist on doing things for themselves, which then go wrong and cause you far more hassle than if they'd just let you help in the first place.

MIL is very frail and elderly, but can still just about manage to book an online supermarket delivery. She won't let us just go to the shop and buy what she wants, because she doesn't want to put us to any trouble. But when she chooses the delivery slot, instead of picking a sensible time during the day when she is usually awake and either: A - a time when one of her carers is there, or B - checking with DH when he can juggle his work so he can be there, she books it for the crack of dawn because it is cheaper. DH still has to prise himself out of bed at stupid o'clock and drive all the way over there just so he can answer the door. He got quite cross with her for doing it yet again yesterday and she told him off!

Aging is hard for many people, particularly as they become less mobile. It’s a lot of change and I know my gran hated the feeling of losing her independence and becoming reliant. My aunt didn’t necessarily deal with things well, she spoke to my gran like a child and would often tell her what to do (not saying you do OP!). This further confirmed the feelings of loss to her. I don’t know if it’s worth sitting down and asking what you can do to help keep them as safe and healthy as possible? What can we do to make life easier and leave you as independent as possible.

I told my sil in a private conversation, but sneaky mil hearing of which I was aware , that if she wouldn’t accept help to stay at home then to start looking at homes because they take a while to find and it would end up there after a fall/not taking meds etc. moved on to respite care and she stayed because she liked the company of the lovely people there (sil did a lot of research) Unfortunately some manipulation was involved because she wouldn’t listen when we tried to discuss. Which I really didn’t like but accepted as fall out to making sure she was safe . She wouldn’t listen to dh and sil , her kids, and they both nearly sent themselves mad trying to help whilst working full time jobs. She was a lovely lady, and I really miss her. Getting older is shit!

"Getting older is shit!"

It totally is. I hope when it's my time to go, I just go, without the long decline beforehand. 70 seems to be the age it starts in earnest for most people. I never had elderly parents, they both died at very young ages but now I am 12 years off 70 myself, I am starting to think about how I don't want to be a burden for either my daughter or my partner, so I get where other people's parent's are coming from. I hope any future Labour Government follow through on their promise to create a National Care Service, much as we have a National Health Service.

My mum was ok until she got to about 85 or so, but the last 4 years has seen her decline a lot mentally and in the last 2 years physically. IME it's rare that people foresee their own decline and research care homes and ask to go to one, it's sort of a last minute scramble off the back of a crisis for relatives to find somewhere with a place and for the place to accept the person. Fortunately we were referred to an organisation that does the finding for you but it's still been stressful. I still need to go and see the care home in person to make sure it looks ok so it's not done and dusted yet.

Re the falls alarm, check with your local adult social care team. They may well have an arrangement with a particular provider to get them (and often also key safes) at a discount.

I'm 73 and my husband is 80, and although we are far healthier and more mobile than some of the parents referenced in this thread we are conscious that we are getting older. We've taken pains to make our house age-friendly - for example when we renovated we made the stairs so that they could take a chair-lift if necessary, we made sure all floors were level and we put in a laundry chute from the upstairs bathroom to where the washer and dryer are in the downstairs toilet so we didn't have to carry baskets of washing down. When we did our kitchen, we put pull-out shelves or deep drawers in the cupboards under the counter to make access easier. There are lots of small practical things that can be done to make a house age-friendly.

My husband is nowhere near as tech-friendly as I am, but he would be able to work his way through ordering and paying for goods online. Teaching your parents to use technology is something we tend to expect our children to do!

I would respond very badly indeed to anything that felt like manipulation or bossing by one of my children. The approaches outlined above by WishIwasatailor and itsjustnotok are the ones that would work best with me.

Some good ideas here, thank you.

itsjustnotok's point about not speaking to one's parents like they are children is worth bearing in mind. I've seen this happen with elderly people I've known, particularly thinking of the older son of a woman I worked for. I hated the way he spoke to his mother, the way he barked orders at her and criticised her. He was so disrespectful and it infuriated me because I didn't feel I was in a position to say anything.

There were carers who were supposed to visit twice a day but I think they've been dismissed, mainly because they turned up at inopportune hours so there was nothing for them to do. An example is arriving to help my dad to bed at 4pm, which, of course, he refused.

We are seeing them on Friday and I'll take on the advice to ask what we can do to make things easier.